We’ve not known each other long, dear, but you’ve insinuated yourself into every aspect of my life. In fact, there is not a part of my life that you’ve not touched, and I thought it was time I finally told you how I really feel about you.
I resented you when you first showed up. And honestly? There are still times where I resent your presence and everything it means. I hate all the things you’ve stolen from me, but more importantly, all the happiness I’ve let you take. I despise the impact you’ve had on me, my relationships, and my body.
Your arrival has changed my life in many positive ways, and for that, I must thank you. You’ve strengthened my relationship with my fiance, even while you’ve made life harder. Without your pushing your way into my life, I wouldn’t have found how strong I truly can be. I wouldn’t have met some of the most precious people I’ve ever known. I wouldn’t have followed my dreams.
I do hate how your presence means a revolving schedule of doctor appointments, medications, and sleepless nights. I don’t like our days spent curled up on the couch together or the times you keep me from my favorite activities.
But I have to admit I like how life has slowed down for me since you’ve been here. I am grateful for your forcing me to stop and smell the roses. Without you, I’d probably still be rushing about, now I know how to appreciate the quieter pace. When you came along and showed me how short and hard life can be, you taught me to treat every day as a gift, and I’ve tried very hard to do that.
Overall, I suppose I’m grateful for all you’ve taught me, though I wouldn’t say no if you wanted to take your leave. You’ve made me stronger and more compassionate, even while your pain feels as though it’s tearing me apart. The conundrum that is our relationship is both a blessing and a curse. And I suppose that’s the way it must be.
In closing, I must thank you for changing my life. For all the good, and yes, the bad as well. I suppose you’re now very much a part of me, and I don’t quite know what I’d do without you.
Since yesterday morning I’ve been live tweeting my life with chronic illness with the #ChronicLife experiment started by The Hurt Blogger.
I’m not sure what I expected when I decided to join in, but I certainly didn’t anticipate the overwhelming support and camaraderie. As I tweeted through failed naps, pain, and my daily events yesterday, I gained new followers, favorites, and retweets in droves. As my phone kept chiming, I stared in wonder. I will forever be grateful for this experience.
So today I decided to open myself up to questions, both from my followers, and anyone who might be curious about life with a chronic illness. In that same thread, I’m sharing a few bare truths here, things about life as a spoonie that no one really talks about. I hope you’ll follow along here, as well as on Twitter, and if there’s anything I haven’t covered, please go ahead and ask!
*I can’t tell you how many times I’ve wished for the automatic dryer/clothes dresser-robot-machine-thing from The Jetsons. Can one of y’all get to making that a reality?
*Shaving my legs is a luxury. I’d like to be one of those girls who can keep up on her personal appearance, but by the time I wash my hair and body, I’m exhausted. So I maybe shave once a month. It just requires so much energy, and very concentrated movements of my hands, which are often just too shaky.
*I stopped wearing my hair long because I would get migraines from wearing it piled on my head in a messy bun, and actually styling it took too many spoons. The short bob I sport now also helps hide the fact that my once thick hair is now thinning at an alarming rate. I lose handfuls of hair each day, a common side effect of many RA medications.
*Sometimes I do things even if I know they’ll hurt. Because sometimes I just want to feel normal for a little bit. So I’ll eat those crackers, even though they’ll aggravate my jaw and I’ll be in pain most of the night afterwards. Or I’ll spend time playing on the floor with my doggy, even though I know it’s hard for me to get back up again, and sitting cross-legged is very painful after only a few moments.
*I haven’t been able to fasten my own bra in over two years. I’ve tried even on “good” days, but turning my wrist that way sends shooting pains through my fingers and hand. Not to mention that hooking the clasps requires steady hands that I just don’t have anymore. Most days I wear a sports bra, otherwise I have to have my fiance help me.
What parts of every day life are affected by your chronic illness? Do you have a question about my life? Ask away, and follow along on Twitter!
Last week I saw a tweet from one of my personal heroes, The Hurt Blogger. She was going to be live tweeting 48 hours in her life, in the hopes to better portray how life with a chronic illness, specifically Rheumatoid Arthritis/Autoimmune Arthritis, really is. No holds barred.
I was inspired, and decided I would join her. Today is Rheumatoid Arthritis Awareness Day, after all, and what better way to raise awareness? So today and tomorrow you can find me on Twitter and Instagram, showing my life without any filters.
Britt (The Hurt Blogger)set out some ground rules for her live tweeting, and I will be doing much the same. During this time frame, I will do my best to accurately portray my life- the good, the bad, and the painful. I will be sharing information about my medications, my routine, and my multiple chronic illnesses.
My goal is simple. I think I do so much to not focus on the negative aspects of life, that I don’t really show the “real” me. I don’t like to dwell on the pain, and so maybe y’all don’t realize how near constant it is. Maybe I don’t show the days where I don’t have enough spoons to manage a shower (like today) or just how twisted and swollen my hands and feet can get. So my goal is to show what I hide, as much as possible.
I hope you’ll follow along with me, and get a better picture of my life. Not because I want your sympathy, but because with more understanding we can make strides in awareness. And more awareness can hopefully lead to more research, better treatment, and a cure.
After spending New Year’s Eve playing cards and games with my fiance and one of our good friends while our dogs played and hid from the fireworks, I spent a chunk of New Year’s Day in the ER with some odd symptoms. Muscle tremors, shooting pains, and random numbness throughout my left arm/elbow/hand. Turns out I’m fighting a harder RA flare than I knew, and this was just another manifestation of that. They fitted me with a sling to keep the arm elevated and told me to go home, take my pain meds and…REST.
Anyone else hate being told to rest all the time? No? Just me?
Anywho, this morning I was getting caught up on blogging and showing some of my blogger peeps some love, and I found this on Tamara’s site. And I thought, “Yes, I need to do this!” So here you go, loves, my 2014 in review, and some hopes for 2015.
What did you do in 2014 that you’d never done before?
Got our adorable doggy, the first pet Scotty and I’ve had together.
I started Remicade infusions for RA treatment. I’ve never had any sort of infusion before.
Did you keep your new years’ resolutions, and will you make more for next year?
I did, and I will! For 2015, I want to focus on living better. I want to spread kindness and joy and do my part to make the world a better place.
Did anyone close to you give birth?
A few of my dear friends blessed us with babies this year. Rebecca, Crys, and Fallah all had adorable bundles of joy ❤
Did anyone close to you die?
Not anyone I know personally, but the loss of Robin Williams touched me deeply. I grew up with him, and it breaks my heart to know the world is missing his genius.
What countries did you visit?
Sadly, none. We’re hoping to visit Canada later this year.
What would you like to have in 2015 that you lacked in 2014?
A blender. A yard for our doggy to run and play.
What date from 2014 will remain etched upon your memory?
I don’t have a specific date, just little snippets throughout the year that make me smile. The look of joy on my fiance’s face as he played his music again. My son and fiance exploring the space museum together.
My doggy running through the tall grass at the dog park. Game nights with my fiance. Nights at Denny’s with Kristen and Seth. Civil War on the big screen. Evenings with Cathy.
What was your biggest achievement of the year?
Following my dream of being a writer. It involved more than just sharing my words here with you. I put myself out there more and faced my fear of rejection. I hope to continue this in 2015 and maybe finally finish a book.
What was your biggest failure?
This question really stumped me. I think as long as you continue to learn from your mistakes, nothing is a failure. As for me, I’m still learning.
Did you suffer illness or injury?
Still rocking the battle against my autoimmune disorders. I was also diagnosed with TMJ, and am awaiting an appointment with a oral maxi-facial specialist to determine our treatment plan. I also had a bout with chemical poisoning. Joy.
What was the best thing you bought?
I honestly can’t think of anything right now. Does the cheesy popcorn I’m calling my lunch count?
Whose behavior merited celebration?
My fiance, who continues to be by side and hold my hand as I walk this path.
Where did most of your money go?
What did you get really, really, really excited about?
Time with my son.
Planning our wedding. Making a new friend. A visit from Kristen and Seth.
What song will always remind you of 2014?
Foo Fighters Something From Nothing
Compared to this time last year, are you:
Happier or sadder? Happier Thinner or fatter? Thinner, though I still have a ways to go. Richer or poorer? About the same, I guess. Scotty did get a raise, but those bills keep coming and they’ve just increased our rent, so…
What do you wish you’d done more of?
Living. Chasing dreams. Crafting. Learning new things.
What do you wish you’d done less of?
Hurting. Being stressed and anxious.
Did you fall in love in 2013?
I fall in love with my fiance every day. I fell in love with our doggy when we first met him and knew he needed to come live with us.
How many one-night stands?
None. Or 365 with the same man, however you want to look at it.
Who were your best friends?
All of my friends are best. Kristen and Seth. Nolan and Courtney. All my girls, the sisters of my heart. Kerry. Cathy ❤
What thing did you do that was meaningful to others?
I continued to share my stories. The crew helped me launch the Spoons 4 Spoonies website so we can continue to offer support to those battling chronic illness.
What were your favorite TV programs?
Once Upon A Time. Just about anything true crime related. Sonic Highways.
Do you hate anyone now that you didn’t hate this time last year?
I try not to hate anyone, it’s so bad for your own well-being. But there are a few people I wouldn’t mind never seeing or hearing about again.
What was the best book you read in 2014?
Written In My Own Heart’s Blood by Diana Gabaldon, the latest book in the Outlander series.
What was your greatest musical discovery?
Sonic Highways by the Foo Fighters. I loved getting to watch how each song came together on their HBO series, and then feel in love with their songs. I’ve always been a FF fan, but this made me love them more and in a new way.
What did you want and get?
A lap desk. A mellow and laid back Thanksgiving holiday. A new phone with a better camera (Thank goodness for Verizon’s free phone offer!). Time with my sisters.
What did you want but did NOT get?
Time ALONE with my sisters. A money tree. A new body.
What was your favorite film of this year?
Uh… I can’t remember seeing many movies this year… Sad story.
What did you do on your birthday, and how old were you?
I turned 32 and spent the day with my son and my fiance and some of our dear friends. We went bowling, which was something I didn’t think I could do with my RA hands, but I did it and it was awesome! We also had pizza from my favorite place, and cupcakes, which makes everything awesome.
What one thing would have made your year immeasurably more satisfying?
What kept you sane?
My writing. Therapy. My fiance. Our dog. All of our lovely friends who popped in to keep me trucking along ❤
Which celebrity/public figure did you fancy the most?
Sam Heughan, the guy who plays Jamie Fraser in the TV version of Outlander.
Colin O’Donoghue aka Captain Hook
What political issue stirred you the most?
I was in an uproar over a few things, others just broke my heart. I’ll say this: I stand for equality for all, and for a safer world for our children.
Who did you miss?
My grandmother. My brother. Misty. My daughter. I always miss my son when he’s not here with us. All of my friends who live near and far, whom I never get to see often enough.
Who was the best new person you met this year?
Kerry! She’s become a dear friend and a lovely support system. Also, with whom else can I sit and reminisce about the 80s?
Tell us a valuable life lesson you learned in 2014.
Sometimes you have to just let things go. Accept that you need to put yourself first, and set boundaries, even if the things you have to let go are people you love. You can’t help others at the detriment of yourself.
Quote that sums up your year:
Thank you all for following along this past year, and for joining me for this little walk down memory lane. Here’s wishing 2015 is full of all the best for all of us! Happy New Year!
Tuesday started with Scotty being sent home from work sick. The week continued with him also missing Wednesday and Thursday. We bundled up in jammies, downed the cold meds every 4-6 hours, and napped sporadically while attempting to hack up one or both of our lungs.
So it seemed like a great time to try a new soup recipe. Obviously.
I found this gem on Pinterest and had been meaning to try it. When the time came, I realized I had only some of the ingredients, and other bits that I could substitute in. So here’s what I did.
For the chicken, I used some leftover taco chicken I had from earlier in the week. It was about 4 cups shredded, as well as a cup of leftover cooking liquid.
I only had a small can of green enchilada sauce, so I used that, the cooking liquid, and a single can of chicken broth for the base. I added all this and the chicken to my crockpot and cooked it on low for about 3 hours.
At that point, I bumped it up to high and added 1 package of cream cheese, cubed. I allowed this to cook for about an hour, then I added 2 cups of instant rice and 2 cups of frozen corn. (I’ll interject that the rice continues to puff up, so in the future, I will only add 1 cup. Otherwise it becomes more a dip and less a soup. Lessons learned.)
That cooked for about another 30 minutes and viola! Dinner is served.
We topped ours with a little shredded cheddar cheese and a dollop of sour cream, and served it with our favorite tortilla chips. It was warm, creamy, and just a tad spicy. The perfect meal for a sick day.
I hope you’ll give either version of this recipe a try. It’s crazy easy and absolutely a great meal for these cold, wintery nights.
This past month has seemed like one thing after another. I’ve done my best to stay positive and just keep rolling with it, but at some point, we all break. I’ve kept much of what’s going on quiet for two main reasons. One- we still have more questions than answers. Two- I really didn’t want to be a downer. I wanted this holiday season to be filled with light and joy. And so I just kept plugging away, decorating our home and making plans.
Then this cold came.
I woke up Saturday feeling mostly fine. I had a little stuffiness but figured it was due to the dry air, as it’s been cold and we’ve had the heat turned up. I went with Scotty to visit his dad that afternoon, and then went out that night to watch Scotty play. By the end of the night, I was sneezing away and felt like my head wanted to explode. Last night, I knew it wasn’t just allergies or dry air, I could hear the cough rattling in my chest.
And that’s when I wanted to break down. Because I’m tired of being sick. I’m tired of cancelling plans and having to reschedule and back out of promises. I’m tired of doctor appointments and tests and more medicine. I’m pissed that once again I have to push back my Remicade infusion, leaving my body open to further pain and complications.
Because it isn’t just about the cold.
It’s the TMJ diagnosis and finding out there’s joint erosion in my jaw. That I may need surgery on my mouth. That there are days where talking is painful. It’s the bouts of temporary paralysis while dreaming and/or waking up that terrify me. It’s the overwhelming signs pointing that stress is taking its toll on me, and the overwhelming amounts of stress that keep pouring in. It’s the nerve pain that shoots down my legs. It’s the sleeping problems, the headaches, the soft food only diet, and oh-look-mother-nature-decided-to-visit-this-week-as-well.
It’s the feeling that it’s always ONE MORE THING with me.
It’s the worry I see on my fiance’s face, even as he’s trying to be so strong for me.
Today I go in for an MRI of my brain and I’m waiting to hear back on when I can get scheduled for the EEG the doctor ordered. I’ve cleared my calendar for the week and am bundled up with hot tea, Mucinex, tissues, my heating pad, and Austin Powers. I’m doing the best I can to practice self-care, while working to let go of the negative and focus on the happy.
I appreciate all of your comments, love, and support. I will do my best to keep writing and sharing my path. But if I miss a day here and there, or don’t get to my email right away, know that I’m taking care of me- one thing at a time.
The lovely Miss Tanya from Mom’s Small Victories has been completing #NaBloPoMo along side myself and others this month. She’s been a great inspiration in our little Facebook writing group, and though I was aware of her site before, it’s been wonderful getting to know her a bit better, and connecting with a fellow RA fighter.
On Sundays, Tanya hosts a link up to share our victories and inspiring posts to help others live the very best lives. All month I’ve been wanting to link up, but one thing or another prevented me. Mostly, my silly head telling me I didn’t have any victories. Pfft.
Last night I dressed up, did my makeup and hair, and went out to watch my fiance play. Sure, I’m still battling these awful headaches with the TMJ, and yeah, at home with my heating pad was probably where I should have been. But I adore watching him play, and I knew my soul needed to see something other than my own four walls.
And you know what? I got the best compliment last night.
“You look like the old Tia again.”
I know that might seem silly, or possibly even insulting, to some of you. But it meant a lot to me. I don’t *want* to look sick. I don’t want to look like the pain that is ravaging my body. Sure, it might make some social situations different if people could see what I go through, but I don’t want their pity. And that’s what it would be, if people could see.
Last night was wonderful for so many reasons. Yes, I’m paying for it today. But for a brief moment in time, I was the old me again, and it felt good. It felt really good. And now I know, it is possible to meld these two people together, to have the old me and this new me inhabit the same body, and to become the very best me. Someone who can celebrate life, even at a dark moment.
Someone I adore dearly is also out there being awesome despite chronic illness. If you missed it yesterday, be sure to check out my interview with Dawnie. She shares how she’s living a life full of victories, no matter what.
What is YOUR victory this week? Link up with us, or share it in the comments. Let’s celebrate together, I’ll bring the dessert!
I recently saw an article on Facebook titled something along the lines of, “20 Questions You Should Ask Your Partner Before Agreeing To Marry Them.” Since I’ve already agreed to marry Scotty, it seemed a little superfluous to start asking him these questions now, and most of them I already knew the answer to. Mostly because we talked a lot in those early days of dating, and also because I like to be nosy.
Anyhow, it got me to thinking, and I asked Scotty if he’d be willing to interview me for this week’s round of #AskAwayFriday. Shockingly, he agreed. (I was shocked because he’s had a crazy long week at work and tons of stress. The last thing he needs is another project. And yet, I gave him one. Aren’t I sweet?)
So here you have it, the ten questions Scotty just had to know about me. Who wants to lay bets on whether he’ll still want to marry me after he reads my answers?
1. What is your biggest pet peeve?
Oy. I actually have a couple that annoy me equally, but if I had to narrow it down, I would say: People who smack their food while talking. And yes, I am aware your father does this. And yes, he is aware it annoys me. And yes, I know that’s why he still does it.
First, I loved how Thomas answered this one, because I, too, am struck by Tracie’s free-writing about seemingly innocuous things. Second, it’s really hard for me to choose. If they were trying to get to know me, Just One…But So Much More, Who I Am, or any of the Ask Away Friday posts are a great start.
3. What do you consider the best thing (fact/life lesson/moment) that your son has shared with you?
Ooh, breaking out the big guns. Especially since you know how awesome this kiddo is. I’d have to say last summer when he was listening to Linkin Park, and was making connections with their lyrics to the issues currently facing our world, like equality and gun control. For him to have such insight at such a young age…I was blown away. And hopeful. Hopeful that he’ll continue to be such a deep and free thinker, and that he’ll someday use that mind to help change the world.
4. Board games or video games?
While I do enjoy Mario Kart and other games on the Wii U with you, I really prefer board games or even card games. They remind me of my childhood, and of spending time with my grandmother. Also, I’m fairly evenly matched against you when technology isn’t involved 😉
5. What is your favorite holiday, and why?
I love to celebrate, so I really love all holidays. Probably New Year’s is my favorite, though. I love the idea of starting anew, and getting a fresh start. Yes, I probably have made and broken tons of resolutions, but…it’s more about the excitement and the infectious feeling that suddenly anything is possible once again.
6. You have 24 hours to show a friend around our great state of Oregon. If sleep wasn’t required and money were no object, where would you take your friend?
Hrms. Well, it kinda depends on the friend, now doesn’t it? Certain friends have different interests, and Oregon has a little of something to offer everyone. But some basics I think everyone should see:
7. You have been fighting invisible illnesses for some time now, starting with your diagnosis of RA almost three years ago. What do you know now that you wish you had known then?
I wish I had known what a huge and wonderful support system the online spoonie community is. It took me somewhere around six to nine months to stumble across the first chronic illness forums, and (as you may remember) those were months spent suffering without much hope. I also wish I had known that I could question my doctors, request second opinions, and do my own research. I went so blindly in the beginning, and some of those choices have caused damage that cannot be repaired.
8. If someone made a movie about your life, who would you want to play you? And who would have supporting roles?
I would love for Melissa McCarthy to play me. I adore her sense of humor, and I think we kinda resemble one another (she says humbly). As for supporting roles, I think Seth Rogan would be a good you. He’s funny and quirky, which are two things I love about you. Then we could cast Jonah Hill as Seth! And how about Christina Hendricks as Kristen, but mostly because of that gorgeous red hair. And Jerry Stiller could play your dad :p
9. You sang in school choir when you were growing up. If you could sing like any particular vocalist, who and why?
When I was younger, I dreamed of being the next Mariah or Whitney. Now though? I would love to be able to sing and write like Adele. In my grandest dreams, I can sing like Adele and I have a band where I do covers of all my favorite rock songs, in ballad form. Because I’m quirky like that.
10. Your love for Linkin Park is well known. Were you a fan of them before seeing them live in concert, or afterward?
I was a fan of them from the moment I saw them on one of the award shows in 2000, performing One Step Closer. I bought Hybrid Theory and those are the songs I hummed to my newborn child as I rocked him to sleep. I never looked back, either. I’ve loved every album they’ve put out, and seeing them live for my 25th birthday was one of the greatest gifts ever. I would love to see them again, and to get to take you and the kiddo.
Well, Scotty says he’ll still marry me, despite some of my answers :p So yay! Hopefully y’all enjoyed this take on Ask Away Friday. If you’d like to swap questions with me, shoot me an email at firstname.lastname@example.org or check out the Facebook group. Scotty and I are off to enjoy a quiet weekend at home, hopefully curled up with a funny movie and some boardgames 🙂
Every description of a Leo personality I’ve ever read says Leo’s love being the center of attention, love the limelight, love being leaders. And for most of my life I have adamantly denied that these descriptions applied to me.
I don’t like to have the light shone on me. (Says the woman who shares her life with the interwebs. Ahem.) But I really DON’T. I’d much rather showcase those around me than to take the light for myself. I get embarrassed and bashful when I’m the center of attention. It’s probably very closely tied with my stage fright, but that’s a topic for my therapist to dissect.
Anyhow, when I started this blog, and started sharing my journey, my stories, with the interwebs, it was as much for me as for anything. It was a way of journaling and processing all that was happening in my life. And if it helped someone along the way, then awesome. I soon realized it was cathartic for me to write my stories, and rewarding to know someone found solace or comfort in my words. I shared more of my path until I realized I had turned some corner and was not only a writer, but an advocate.
Even then, I shied away from praise and the limelight. I wasn’t doing anything special, I was just writing about my life. So yes, when others tell me how strong or brave I am, I still blush and babble about how I’m just me.
Because that’s how I see it. I’m just me.
I’m not strong or brave or courageous. I’m just me, living this life the only way I know how. Because the other option? That’s giving up. And that is NOT an option for me. So it’s not brave that I get out of bed every day to battle, it’s just me being stubborn.
Fortunately, I have awesome friends who remind me that being stubborn is actually a form of bravery (or stupidity, sometimes). Friends who constantly lift me up, who don’t let me brush off the compliments and well-meant platitudes. Because they know it’s important to recognize and celebrate every good thing.
I might just be me, but maybe I’m a brave me. I’m certainly stronger than I ever thought I could be, and stronger than I often give myself credit for. If it’s courageous to drag this cranky body out of bed each day, well heck…I guess I’ll go stand in line with the cowardly lion for my pretty badge.
I say all that to tell you this:
You are stronger than you give yourself credit for. You are brave and courageous. Did you wake up and draw breath this morning? Then you are a rockstar and you deserve some of that limelight. You might feel like me, like you just don’t have any option, but that doesn’t make it any less noteworthy.
It takes tremendous determination to stare a life of chronic pain and illness in the face and say, “I will keep living, despite…” To get up in the morning and LIVE despite the pain and fatigue. To carve out a path to your dreams despite the limitations and roadblocks.
It is an act of great strength to be YOU, in spite of all that would knock you down.
So this is me, asking you to join me in the limelight. Today we say yes, we are strong. We are brave. We are living, in spite of, and we’re doing it better than we ever thought we could.